Brain Mets Sisters
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loving the great news! let's keep it coming!!
everyone's positivity, even in the face of more sh*t being heaped on the pile, is so impressive, humbling & most of all, motivating! thank you! inspiring. best thoughts & wishes for great news, improvements, & no new 'challenges' (understatement if ever there was one).
letranger - heard some folks praising polly's ponytails. really not too helpful & I haven't used it, but thought might be worth a shot if it can save you some frustration sometimes. had 1 spot of hair loss from GK (nowhere near 6" that's just awful! so sorry) - fwiw, it started growing back faster than I expected (waaay faster than post-taxotere regrowth). so sorry you're dealing with this, too - just sucks.
thank you so much for sharing tons of useful info. things seem a little less horrid when I feel somewhat informed & these days, I haven't been able to do the 'homework' I used to. you ladies are seriously amazing - I'm so grateful for all I learn & thankful to you for helping me feel less lousy about not keeping-up as well. I hope I can do the same for someone else. thank you so very much - please give yourselves a huge hug from me
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Lori, I'm so happy to hear from you again and that you are doing well!! I hope the Ixempra gives you great success!
Bad, thinking of you today!
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Thinking of you today Bad!
Much love to everyone else.
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"Hi-ho, hi-ho, its off to nuke some cancer in my head I go". Two down, two weeks to go. Gotta maximize the damsge rads can do to the cancer. I am planning to fast some a few days this week and a few next -- anything to piss off cancer and make treatment more effective.
I also go see a new neuro-onc today. It will be interesting to see how it goes.
All the lesions that are stable snd shrinking are great, keep up the good work everyone.
Bad -- good luck with your surgery. It's a tough one but I bounced back tremendously well and I hope you do as well.
Ann
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Bad Thinkjng of you !!
Let so sorry about your hair. I was surprised that ALL my hair fell out after WBRT. the 4th time losing my hair wasn't any easier. Hugs
I'm feeling really weak today I think it's a steroid crash as I'm down to just 1 mg a day. Yesteday was the first day i didn't have an afternoon dose. I hope that's what it is !!
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Since this is where we share what no one wants to study much, here's an update from me.
Day 12 (out of 20) Tomotherapy radiation to the cerebellum, touching on edges of the occipital lobe and first two cervical vertibrae. As you all know we are both trying to treat our brain judiciously but there are also logistical issues. The fields we're set up to shoot across the back of my head, reapplying radiation to area that had been treated with SRS in September. They also wanted fields with clear margins, in case that u need to do the next area. Either tomotherapy or proton therapy would work for targeting partial brain.
Today my scalp felt a lot tighter and hair shed is in full swing. I hope once the hair falls out that a) my scalp stops hurting and b) that my hair grows back.
I have increased shooting sensations in my legs, I am supposed to get worse with rads and then recover. My balance and coordination are still okay though. I get a slight headache in the morning but 2-4 mg of Dex with Bosweya Plus seems to help.
I had IV Vitamin C (25 mg) and hyperbaric oxygen (2 hours) today. These are to help my brain during treatment -- the cerebellum has great demands for vitamin C. Both treatments work against cancer too though I'm doing lower doses therapeutically -- but if some cancer does I won't say no. I'm doing a ton of other things as well including intermittent fasting and a Ketogenic diet.
Scary but rads is only 8 more days and I hope it is enough -- you know the feeling.
I met with a diff neuro-onc yesterday and he made me feel like a stage 4 patient, terminal and unrealistic. Upon reflection I realized that he failed every single one of my questions. I have an unwritten list of ways I evaluate neuro-oncs and he failed the job interview. That was discouraging
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I hope everyone else is doing okay.
XO
Ann
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Agness, you really are a superstar! thank you so much for sharing the information you've worked so hard to amass - I'm in awe of your resourcefulness. so sorry the radiation is causing you more discomfort. I know it, especially w/ its effects magnified by your hard-hitting complementary efforts, will be successful for you! I hope the last 8 sessions go smoothly & quickly & that you find relief from the SEs.
if you're willing, would you please share more about your unwritten neuro-onc evaluator list?
anyone have tips to locate a neuro-onc (&/or med onc) who practices more progressively/creatively? neuro-onc I saw is brilliant, kind & positive, but his practice is conservative - standard-of-care is the bible. period. I'm finding that's the rule at major institutions I've been to.
want to find the best of both worlds... resources, safety & infrastructure of major center coupled w/ out-of-the-box, personalized medicine. anyone found this?
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I was in touch with Dr Borges in Denver today. I'm not eligible but Giovanni, perhaps your wife is or others with ER+/HER2+ LM. You would have to look up "Borges, Colorado, JPBO - abemaciclib" To find the trial. There might be other study sites.
"For Part F: have HR+ breast cancer, NSCLC, or melanoma with
leptomeningeal metastases by documented positive CSF cytology or by
clinical signs and symptoms associated with abnormal magnetic resonance
imaging (MRI) features. Concomitant parenchymal brain metastases are
allowed (not required), but must be stable for at least 4 weeks following whole
brain radiotherapy (WBRT) or stereotactic radiosurgery (SRS).
The treatment would be the study drug [JPBO - abemaciclib] given with Herceptin. If your tumor is ER positive, let me know. We'd love to see you here for the trial"spicy - I'll write something up later about my questions. Having been down the infertility path before and seen how broadly the standard of care is painted and the frequent use of off-label uses of drugs I believe that the neuroscience medical professions seem to be exceedingly rigid, by the book, uncreative, and actually uninformed about advances in patient care. I have yet to meet anyone who was a real groundbreaker -- so no wonder there haven't been more advanced in brain tumor and diseases. I find it flabbergasting. Too many reports that say "should be studied"
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great news - MRI showed near complete resolution of both brain lesions & nothing new! repeat mri in 3 months.
which is beyond lucky, especially as systemic treatment's apparently failing, albeit slowly. grateful to be absorbing one sucker-punch at a time. trying to focus on the brain part of the report - why does it always feel bittersweet?
agness - couldn't agree more. heartbreaking to read so many promising tx that haven't gone anywhere in years.
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just a quick check in. I'm two days post surgery and doing well. The surgeon was able to scoop the suckers out easily. I'll need some ot for weakness in my l arm but I'm on my way to recovery. Will get pathology and f one results in a few weeks and will restart oral chemo then (the same one Agness mentioned)
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Agness/Ann,
Thanks for thinking of my wife (she's HER- though). I'm not able to find the study with Dr. Borges. What I found is the study at this link, and I was wondering if it is the same.
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hi all, praying for u all everyday . I saw R/o yesterday, M/O today. R/o said CT of brain done w/PET scan, which showed 2 small spots that radiologist wasn't sure about. R/O said unless I was have deep pain he would be more worried. M/O said about same, that we r going to watch sites for now. On new meds A/A combo. When I asked about larger number of cells need to be formed before consider treatment did not get direct answer.
Letranger- can u PM me about alternative & "own stuff" I am curious. Still have h/a right side if head, may be due to A/A. Su
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Hey all,
Sorry to be away for so long. Been concentrating on my son's college applications and a bunch of other stuff.
Got my latest scan results a couple of days ago and I'm happy to say my brain is clear! My scan months ago had shown that my biggest tumor was shrunken and it looked like necrotic tissue, but I had read that necrotic tissue could sit in your brain forever. Well, it's now just a "punctate lesion" which is essentially nothing but a dot. So your brain can get rid of necrotic tissue in a short time span! Who knew?
For those of you who don't know my history, I had 12+ brain tumors including one that was 2cms when I was initially diagnosed 22 months ago. Had WBR and radiation to my eye which also had a tumor. Also had mets in my lungs (4cm plus "satellites") and femur bone and a 4cm tumor in my breast.
Largest lung tumor still the only thing showing up in contrast. Pretty much unchanged (2.8 x 1.2cm, SUV 1.6). Have heard that any SUV < 2 is considered normal so I'm not too worried about it. Tumor markets continuing to fall (normal is < 3.8)
Still on Xeloda and Xgeva. Still going to my Chinese medicine doctor every month. Still dancing and doing yoga every day!
Hugs, Susan
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Giovanni - perhaps it is this one?
https://www.clinicaltrials.gov/ct2/show/NCT0230802...I can ask for the record number if this isn't it.
Susan -- that is really wonderful news. I am sending you the biggest virtual hug right now. Way to go.
You can do hyperbaric oxygen treatment to help your brain heal more too you know. I don't know if insurance will cover it but it is supposed to be amazing for healing up tissues in the body -- even old scars. I just had my first session yesterday, being in ketosis and getting IV vitamin C the pressurized O2 can go deep into the tissues.
Shedding and starting to get dreads and thinner hair in the back. Sad. Sniff. I might get it trimmed a little so it doesn't look stringy.
Spicy - I'm so glad about you getting through surgery safely. I'm sorry about the news of your lung lesion. Can they treat it with proton therapy? Also, the gals on Inspire.com Advanced Breast Cancer are really great about knowing options for various disease progressions -- you have to join to see all the member posts. Do you have bestbird's free metastatic breast cancer guide?Sue -- I hope that things work out well with the meds. Sometimes they do. Maybe talk with a radiogist at a proton center?
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Agness/Ann,
Thanks for the link as always; it looks to be the same clinical trial. However, I'm confused about to the eligibility requirements. My wife has ER/PR+, HER2- and leptomeningeal metastases (LM); the eligibility criteria for part B are HER2- with exclusion for LM; the eligibility criteria for part F are HR+ and LM. Does that mean that she would be eligible for a part F clinical trial?
SusaninSF,
Congratulations! I was worried, because I had not heard from you in a while.
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I am totally feeling it now. Red on my neck, more sensations in my legs, tired eyes (especially on the right, okay driving with glasses), body hated someone tapping my foot (this was weird), esrs feel weird a bit. I woke up tonight and I had sweat so much I drenched the sheets and my clothes. Anyone else have sweating?
Six doses to go. My medical empath thinks treatment is working but says I need to not chalenge my cerebellum right now, the extra challenge will only hurt it and not help. She said no balancing on one foot (no dance), no long distance highway driving but local my body is okay with. She said there may be days when I need to be on bed rest, walking might be too much. This lines up with what the RO told me, it will get worse before it gets better. It will take 4-5 weeks after we finish to start to feel more normal. We all know this is brain trauma though so we need to treat our bodies carefully.
The healer said the nutritional support is great and will help my body, the healthy cells, to survive the onslaught and come back.
Each day at treatment I tell my healthy cells to like low and cancer do its thing and let the rads take iy. A visualization I came up with is to imagine your healthy cells as water and the rads passes through it. The cancer is like bubbles and the rads pops them.
Makes me sad to have to do this to my body but the healer said my body really didn't like the cancer and it is okay about the damage. Our poor bodies.
Lets all beat the odds though, shall we?
XO
Ann
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Agness/Ann brings up the issue of driving. Has anybody had seizures, and told by the doctor of driving prohibition for three months? I'm navigating the legislature in Connecticut, regarding this and found a lot of hearsay misinformation among medical professionals, as well as ignorance among department of motor vehicles (DMV) officials.
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I wasn't permitted to drive by my neurosurgeon for 4 months following my seizure and craniotomy. I was okay with this as I felt unsteady for awhile and wouldn't have trusted myself driving. When I asked my neuro about returning to driving, he said that he would permit it as I had been seizure free since my surgery and he really felt that the seizure was only a result of the met. Since it had been removed, he didn't antcipate any further seizures...knocking on wood...I will have been seizure free for 1 year on February 13th.
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I never had any seizures so that wasn't an exclusion criteria.
I am more using my body as a guide. My treatnent is meant to cause ataxia and that affects coordination tenporarily. I don't want to overly challenge my brain when it's being hurt and recovering so I want to protect it.
At the extreme of an example of someone with no cerebellum we can more clearly see the activities of the brain involved in cerebullar function:
http://www.npr.org/sections/health-shots/2015/03/1...
If you studied movement growing up (dance, martial arts, etc) then the brain distributes the coordination functions around the whole brain and the effects are less noticeable. I have seen this myself, especially in how well I have rebounded from my various brain met interventions.
BTW, did anyone else notice how few instructions they give post care. The look for acute trauma issues (call us if you are dying) but otherwise it is post-op and nothing else. I don't take that approach and Im glad my naturopathic Onc and other providers are there to help me heal better
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My neuro told me not to drive due to a deficit in my peripheral vision caused by the occipital lobe tumor. Now that it's been removed, I should be cleared to resume within a few weeks or months. I believe I experienced simple partial seizures in my left arm but I was never formally diagnosed with them, so I don't think that will work against me resuming driving
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Bad - so glad you made it through your surgery! Best wishes to you on a speedy recovery.
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Bad, so glad to see you posting again! Are you home yet? You've certainly be in my thoughts!
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my last brain scan is clean. Nothing new and no evidence of my old. Relief!
Best wishes to all of you with ongoing treatment.
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Great news left!!! I'm very happy for you.
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Woo Hoo Left!
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Just to get it down coarsely, here are the things I was thinking about as I spoke to the neuro-onc I met with on Monday. If I was interviewing him for a job I would never have hired him.
TO ASK YOUR BRAIN METS DOCS - INTERVIEW QUESTIONS
Want to live, stage 4
How does the doctor respond when you say you want to live? Do they pity you or try to make you be realistic about your prognosis? Do they try to remind you that your diagnosis, particularly in the case of brain mets is terminal? Are they willing to fight for you, to help you gain the most ground possible?
Ommaya Port
Typically these are placed in late-stage disease patients and docs don't seem to understand that there is an earlier presentation as well, perhaps dire as well, but different. There are two sizes of ommaya reservoirs – adult and pediatric. I have a smaller pediatric sized one and it is totally unobtrusive, you really can't see it unless I move my hair around. Does your doctor stick to a standard, adult size? Do they treat you like you have late-stage disease and no feelings about how you appear?
IV Vitamin C
Vitamin C, an anti-oxidant, shows up again and again in my research as being both good for the cerebellum, good for connective tissue, and also for being damaging to cancer. People use high dose infusions to try to kill their cancers as well. There is a difference between overlapping treatments, getting an infusion an hour or two before rads treatment so that a compound is still actively circulating. The doc I spoke with didn't seem to understand any of the research, brain healing/protection strategy, nor seemed aware of studies showing that rads and vitamin C are a good combination for protecting good cells and hurting cancer
Ketogenic Diet
When I brought up I was on a keto diet here is what I was able to gather from his responses:
He doesn't spend personal time researching other methods of treating brain cancer, he doesn't understand basis nutrition (no one should be eating Crisco), he has not read up on a ketogenic diet, he wasn't curious about my use of it nor research nor who was working with me on it, and he can't cook for a damn. There is a ton of info about this diet and it helping brain cancer patients and he was oblivious.Methotrexate
This is a last-ditch effort, a palliative drug. It doesn't really work and it doesn't change the odds or lengthen your time. If someone brings this up they are giving up on you. I know this from an oncology professional who is a family friend and 93 – since before chemo. They can try but there are other drugs. Evidently for methotrexate they give it in the hospital over several days anyway, and I heard it works best doing IT and systemic at the same time.
IT Herceptin at 100 mg
Since this is a developing protocol it isn't unbelievable that the dosages are different. The published dosages are helping but people are dying where on the higher dosage they are living. Folks who cite older stats and dosages don't impress me.
Brain lymphatic system
This is a new discovery in the past year and it totally knocks they neurosciences on their head as for the past century they have heard that they brain and lymphatic system aren't connected. I've thrown this out a few times and it is an easy stumper. They will say something like that being unproven to have an impact. A better response would be excitement over the new development and dismay that we don't yet know – and ownership of that.
Clinical trials, compassionate care
Do they suggest clinical trials? Do they know that you might not be eligible? Do they balk when you say you want to access through compassionate care claiming too much work, FDA slowing things down, worries about their research?
Current drugs and therapies
Are they aware of newer drug treatment protocols that are having results for patients with brain mets? Might they recommend Topotecan over Methotrexate? Do they know that lap/cap (tykerb/xeloda) might work? Just kinda an example. Are they sticking to standard of care – only SRS to X number of lesions otherwise whole brain radiation (you know, what will insurance easily pay for) or are they willing to listen to you and think outside the box.
Immunotherapy
Are they familiar with how this works – low tumor burden, shots over a year with boosters, concurrent anti-HER2 if appropriate, sooner is better than later, etc.?
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Agness/Ann,
Thank you so much for the compilation. In my wife's case we discussed a couple of the alternatives with the oncologist, but concluded they would not be effective. Regardless, I wanted to mention what I heard in an interview with Dr. DeVita, a former director of the National Cancer Institute and of the Yale Cancer Center. He said that if your doctor tells you there is nothing else that can be done, don't take no for an answer and go look for another doctor. De Vita is the author of the book The Death of Cancer* which came out last year.
Note*: Vincent DeVita. 2015. The Death of Cancer: After Fifty Years on the Front Lines of Medicine, a Pioneering Oncologist Reveals Why the War on Cancer Is Winnable--and How We Can Get There. New York: Sarah Crichton Books.
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Great advice Giovanni.
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Bad ! Good to hear from you. Glad you are on the way back up.
Left that's great ! Spicy you too !
Agness. Hang in there you're on the downslope!
I did not have a tx yestesday as I'm not feeling so great. We decided to give my Bobby a few extra days to recover and try to discern what is what. I go back to onc Tuesday and the plan is to have infusion on Wednesday and we are going from weekly to every three weeks Carbo at a reduced dose.
I'm having symptoms like I did before I was diagnosed with my original brain tumor the question is is it because I'm off almost off the steroids and I still have some brain swelling left over that's becoming apparent now that I don't have so many steroids or do I have something growing in that's my biggest fear of course.
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I'm thrilled to hear the good scan news from spicy and left.
My parents booked the four of us at a hospital hotel until tomorrow so I've been enjoying getting pampered. My husband runs out to get me falafel on demand (gotta feed the Dex), I've been binge-watching Top Chef and L&O and both my hubby and mom have been working with me on exercises to get my left hand function back.
I have good caregivers.
I really like my neuro team.
The neuro nurses were angels and kept me comfortable and pain free during what could've been a miserable experience.
The advice and knowledge on this board is amazing. I feel like I have the support and info for the fight ahead.
I think I will beat the stats.
I don't feel lucky to be in this situation, but I feel like I've so far come out of it a lot better than I could've been. It's scary how easily I could've fallen through the cracks
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